... Even for me.
It has been over 2 years now since my release from the hospital. I have tried numerous times to create a blog post for the still-constant questions about my health and my lifestyle now. To describe my illness and how it effects my life. I can't do it. It hurts to much. So this is the best I can do.
I have always been very public about my mental and physical health issues. I have my reasons for this, but posting the details behind my reasoning could upset people I love, so I'm not as public about the WHY as much as the WHAT. I have severe depression + anxiety, which are usually well-controlled but sometimes come out and bite my ass. That's just life.
The real problems come when something else is feeding the depression. Two years ago, it was my increasingly poor health and my refusal to admit how sick I was getting. Eventually, my body won out. My now-husband brought me to the hospital, where they gave me 2 weeks or less to live unless I underwent treatment. I stayed and got help.
Unfortunately, while most of my time at the hospital was very positive, I was emotionally abused by one of the people who was supposed to be caring for me. In the end, I wasn't even able to properly report her (due to the incredibly complicated process required). She physically threatened me, swore at me, told me I was ruining the lives of everyone I loved... then continued this abuse on a number of other occasions, all witnessed by others. Needless to say, not what I was hoping for in my recovery.
Another "small" problem in my time at the hospital was a negative reaction to one of the anti-anxiety meds they had me on. When anti-anxiety meds don't work, they tend to do the opposite of what they're intended to, and the result -when combined with my OCD- was less than ideal. I literally clawed my skin off, in a number of places. Which, in and of itself, was not so bad, but many of the nurses tending to my wounds were so incompetent or uncaring that they did not change my bandages correctly (no gloves, general lack of sterile anything), and I contracted a staph infection. Eventually, it also morphed into impetigo.
Only a few weeks after leaving the hospital, I was covered from head to toe in ulcerated lesions. That's about as bad as it sounds. My face was completely covered and I'm still shocked it didn't scar, though the rest of my body did: to this day, I have centimeter-wide scars across my entire body. During this period, I was unable to eat anything but fruit and ended up losing almost 50lbs in 6 weeks, almost all of it muscle, losing with it strength and vigor I have never recovered.
For the next year, we did nothing but concentrate on identifying my triggers and systemically removing them from my life. While we never received a proper diagnosis, the working theory was that I had an autoimmune condition which was worsened by stress. This condition would then flare up in a variety of different way, effecting all parts of my autonomic systems (including my lungs, heart, inflammatory response, and -most importantly- my immune system). The condition, called dysautonomia, can be a primary condition (meaning, the whole issue) or can be a secondary effect of the main condition. This meant that more life-threatening conditions such as SLE (a type of lupus which effects mainly young women in their mid-20s) was still on the table. Dysautonomia also has a genetic component, which made a lot of sense as my mother shares some of my symptoms and her cousin has had a very similar progression with her illness (though never as severe as my own).
Still, we had run out of fight. With no family doctor, I had no one to advocate for me, to fight for the testing + referrals I needed. The hospital had referred me to a Rheumatologist, but like many other doctors before him, he dismissed my symptoms as Fibromyalgia (which I am quite familiar with and does not come close to matching my actual symptoms). In fact, it was the most frustrating and upsetting doctor's appointment of my life. He dismissed me without examination, without discussion, and without even looking at my file or asking the basic questions that any doctor would ask facing such a case. I was dismissed without consideration.
So for a year, we gave up on doctors. My husband concentrated all his energy on helping me identify my stressors + triggers, and forced me to remove them from my life. I hated it, but I started getting better. I started medication to work on my sleep phase delay, allowing me to live on a schedule for the first time in my life, (save when my fatigue forced extra sleep upon me). When I had a severe fatigue attack, my spouse forced me to slow down, to stop fighting and accept what was happening. I hated being idle, but I no longer had the physical or emotional pain of trying to fight through (plus I broke fewer objects since I no longer attempted to do more than I physically could). There were many bad days. There still are. Days when I cannot raise my arms to type without weeping from pain and frustration. Days when I cannot rise from bed.
But with time, and patience, and self-knowledge, we gained some control over the worst of my symptoms. My inflammation retreated and, with it, much of my pain. My daily fatigue eased a little, and the severe attacks became less common. But I still wasn't myself. I was lost in a fog of pain and fatigue-related ADD. I couldn't focus, couldn't do much of anything.
That's when we found the doctor I now see. He is a medicentre doctor, and thus can only do so much for me, but he was the first doctor in 15 years to actually treat me like a human being. The first time I saw him, he put me on the medication that now makes my life liveable. Literally more than 10 years since the injury that left my back in daily (and increasing) pain, an issue I had consulted more than a dozen doctors on, he put me on a pain-management medication that now allows me to move + function without screaming. He didn't throw narcotics at me (a bandaid for a gunshot!), but actually found a long term solution: one which should have been suggested years earlier.
With my back pain finally managed, we decided I should go back to work. Not really because of the money, though lord knows it was nice, but because my sense of self was so enmeshed with work that I could not defeat my depression demons while I "lounged" at home. It was a good move, in some ways: it helped me feel more like myself, allowed me to feel like I was doing my part for the family, and got me some much needed social interaction. However, I was far from well and often had to leave work early (or couldn't appear at all) due to pseudo seizures, fatigue attacks, and my continually worsening heart condition.
In January 2012, I finally managed to see my doctor during one of my heart's serious episodes. I should have gone to a hospital, but at least I was finally able to show a medical professional how serious my heart issues were. Unfortunately, the issues come + go, so I was unable to get any proper testing done, but my doctor prescribed Beta Blockers and made my life a thousand times better.
I had my autoimmune symptoms mostly controlled. My fatigue was minimized, my back pain controlled, and now my heart was finally regulated at a normal(ish) speed. It was the most normal I had felt in 4 years. Unfortunately, my work -previously 4-12hrs a week- became full-time during the holidays spring season. On Mother's Day weekend, I put out my back during a shift. The injury was to the same area as the previous issue (still not properly diagnosed) and they suspected a herniated disc. My doctor still refuses to do an MRI as I can't get surgery until I lose function in my legs or bladder etc, so it's all up in the air: did I fully herniate a partial herniation that had remained for a decade? Did I reinjure an old break that didn't show up properly on x-ray? 5 months later, they still can't tell me.
Due to my health issues, I cannot take most medications nor can I heal injuries with inflammation. The pain was managed with a dosage increase, but I was even more physically restricted. Eventually, with the back pain, increased fatigue, and worsening heart condition, I was too ill to even work a single day a week, and was forced by my husband and doctor to leave the job I so enjoyed.
During this period, I started to use a cane for long trips away from the house. The cane helps minimize my fatigue and keeps me from falling or hurting myself if my heart acts up. In July, the doctor suggested I start using it full time, and I find it helps a great deal. I'm a big hit with the little old ladies, who often ask me about my fancy cane and my broken body.
So for a month or two, I have been a housewife again, concentrating on my own health and my husband's. September brought a flare up of my autoimmune issues, and many plans have had to be cancelled. Many chores are left undone. But this has become our normal after 3 years. We accept the illness, work around it, and fight to give me as normal a life as we can.
For two years, we have worked under the assumption that this is the nadir. The lowest point. Whether I have only dysautonomia, and my heart condition etc result from it, or if it is a larger and more dangerous primary condition such as Lupus, the stats are all the same. Things get bad for 5-10 years. Fatality rates are high, symptoms run the full range, people feel their lives are over. But fighting, like we have, to remove triggers and keep on an even keel eventually pays off: symptoms reduce dramatically, and after 20+ years they are often minimized to the point of normalcy. Your body re-learns how to function. That's what we tell ourselves, on the bad days. Maybe I will lose some function, maybe I will always be tired, but it gets better.
Except, it's not getting better. It's getting worse. The symptoms we can't control like my back pain and heart condition worsen almost daily. Medication can only do so much, and I am extremely limited due to my other conditions. (For instance, my heart medication makes my asthma severe and decreases my circulation in my feet to dangerous levels, something we have to be aware of daily lest I risk losing toes or more.) A year ago I could walk and talk normally, albeit only for limited time. Now I rarely have a day when I'm so well: I walk with a cane even at home some days. I spend most nights shaking and weak like a 90yr old woman. My grandfather often appears in better health than I do.
We have referrals in the works. New physical therapies, new exercise plans. We try to stay positive. Because this is the nadir. If we can survive this, it will only get better.
For a year, my depression and anxiety have been well controlled. I've been happier and yes, even healthier, than I can ever remember being in my adult life. Lately I've grown weaker and weaker, but it wasn't until the last few months that it started to really get to me.
5 years ago I climbed mountains. Little ones, and it wasn't easy, but mountains. Now I putter along with a cane and a wheeled shopping bag, unable to carry more than 15-20lbs. My head is clearer than it was, I am myself, and I am grateful for that. But I am not going to climb any mountains.
A few weeks ago I shared on facebook some news which has deeply upset me. My doctor, the man who refuses to MRI my spine despite years of pain and no way to get a proper diagnosis without it, the man who consistently refuses to do any unnecessary testing from heart monitors to blood tests, has decided he would like me to get another MRI of my brain. He has reason to suspect I have MS.
I don't believe I have MS. It doesn't fit most of my symptoms, though it would explain a few things. It is an autoimmune condition, and it has come up a number of times in my research, but I've always dismissed it because it doesn't really fit my experience. But it is a strange, poorly understood condition that manifests in many unique ways, and it's enough of a possibility that my doctor who never tests for anything wants to send me for an MRI. Even that isn't the part that bothers me. There have been great strides made in MS treatments. I know two women, both late-middle age, who suffer from this condition and one leads an almost normal life despite the diagnosis.
What upsets me is that, unlike the other possibilities on the table, MS would mean this isn't the nadir. MS means this is as good as it gets. And no matter how many treatments we try, or how much progress they make, all it does is slow the inevitable. It helps slow the time between flareups. It helps minimize symptoms. But there is no getting better, only trying not to get worse. All that keeps us going on the bad days is the though that, with time and practice and luck, we can get me back to some level of normal. MS would mean that's no longer our reality.
I'm scared. We're moving in the wrong direction, and I don't like it. I will go to physical therapy. I will get my heart tested, and my brain tested, and my innards tested, and whatever else they ask for. I will keep fighting, as I fought to regain this much of myself. I will fight to stay with my husband and our wonderful lives. But it would be a lie to say I'm not scared. A lie to say I'm not depressed, and frustrated, and angry. I'm 27 and I can barely walk most days. I'm glad for the journey and all it has taught us, but I'm scared that I will have to leave all that we have built over these last few years. I'm scared for the day that my heart finally gives out, or my immune system, or my mind.
The doctors ask me regularly if I'm feeling depressed again. I'm not depressed. Maybe for awhile after being told the diagnosis may be changing. But not now. Now I'm angry. I'm frustrated. I'm pissed at everyone and everything. At my friends who waste their health and youth. At people who won't fight for what they care about. For the people who don't understand how hard it is for me to sit and type, never mind run and laugh and play. I'm mad that this is my story, that this is the only way I can learn to be a better and stronger person. That I'm so stubborn + stupid the universe had to take everything else away before I could come to understand what really matters in life. And yes, even after so many years, I'm mad at my body. I scream at it, "MOVE DAMN YOU. Stop whining. Why can't you just be like everyone else?" I sound like my grandfather. Allergies are in your head. Tired is for other people. It's stupidity like that which almost killed me, which made me pretend there wasn't a problem until it had already ravaged my body. Yet I'm still angry.
I spent my whole life ill. I was hospitalized at 4 for asthma. I could never run and jump and play like the others, it was always different. I did the math once, and I spent an average of 20 days a month sick during jr high. I nearly flunked every P.E. class I ever took. This feeling, this weakness, is nothing new, and it only got this out of control because of my own stubbornness. But 5 years ago I could still climb mountains. I could push hard enough to have a normal life. There was a time I used to hide in the back room during work, have a seizure and then come right back out like nothing happened. There was a time when I walked up a mountain with a messed up hip, pain so bad I couldn't walk properly for weeks. But I climbed that mountain. I clambered over avalanches as hard as cement. I crawled out on ledges so thin + slippery I should have died. I was master of my self once. I didn't let the illness control me.
I like my cane. I like being home when my husband gets in from a long trip and not worrying about how it will interfere with my work shift. I like being able to baby our pets, and playing around with my crafts. I like my life. But I hate that I wasn't the one who chose it. I hate that I will never get to spend a week crossing the Rockies on that back country map I've had pinned for years. I hate that I am not the one who gets to say, "I'm ready for a wheelchair now" or "I will never be well." I hate being controlled by my body the way I once controlled it.
"Bed rest is like being allowed to stay home from school but not being allowed to leave the couch... eventually, anything within arm's reach becomes worse than anything at school."
November 3, 2012
... Even for me.
January 23, 2011
I see a lot of this type of article come through my various friend circles - being the child of hippies, I've been hearing about these problems long before we had the world wide web. A lot of people are hit by the depressing state of animal populations, by the terrifying diagrams of fading cultures and species and an entire mini-universe of interactions that we only just barely understand.
That frustrates me, this focus on the negative. It's like watching American news shows, fear-mongering. What we need is hope-mongering. We need to remember the strength of this planet which supports us, all of us from idiot hunter to commune hippies.
We forget stories like the one we found in the DNA of Degus - after a volcanic disaster, LESS THAN A HUNDRED INDIVIDUALS of the species survived, yet these creatures are now a plentiful pest in their home country and beloved pet all over the world. The entire species was reborn from less than a hundred - think about that for a moment. There are serious problems caused by this, of course, in breeding always has side effects, and degus will never be as strong or healthy as they were before the disaster, but they survived.
What we need to remember when we hear statistics about rapidly decreasing animal populations is that THERE IS STILL TIME. Some species have only a few dozen members left, but there is still a chance. Lion may die out in a generation if we don't change, but we still have time to change. The world will find a way to balance, if we only meet it halfway. We don't need to destroy every single oil refinery in the entire world, or kill big game hunters like they killed their endangered prey - we need to change, yes, we need to grow as a species ourselves, but there is still time. There is still a very real chance that we can save the lions, and the degus, and all the other things that make this world work. These things which keep us alive.
We don't need fear. We just need enough hope, enough to make the changes neccessary. We are at the cross roads and no one else can save us now except ourselves. Have hope. Believe in change. Then become that change.
December 23, 2010
A big part of my recovery over the last 6 months has been learning what keeps me healthier and then trying to remember to do it on a semi-regular basis. As a result, Yves and I have started to develop a bedtime routine - he tucks me into bed, brings me my medications (because otherwise I always forget), and we talk for anywhere between 20min to an hour while my meds kick in. Since I can't seem to fall asleep with Yves nearby (apnea = a tad nerve wracking!) he then goes back to the living room and, in the immortal words of Peg from Married with Children, he "has fun without [me]" for a few hours. As a result, for the first time in a decade I am actually getting to bed at a reasonable hour and sleeping the 12+ hours a night I need to prevent muscle spasms and all manner of other physical problems. (Such a simple, yet insane, solution!)
But last night, the girls had other plans for me. Despite the hectic season, about a dozen of my closest friends managed to make it out for a nice (gluten-free and vegan friendly!) dinner at Chianti's - where I proudly displayed an 80's veil complete with rosette and a red boa kindly donated by friends. We then had a rope bondage class with possibly the most non-threatening 'bear' I've ever met (and his sweet but blushing girlfriend!). We also quickly learned that Fiona is beyond inventive, Danica has a secret genius for rope tying, and Jennifer really, really loves making rope traps to catch me in! :P
After bondage class, we ventured to the always-empty Rosie's where my unofficial bridesmaid, Fiona, hosts kareoke every saturday and she set us up with what was basically a private party. Kareoke, a whole bar to ourselves, and all the cheesy 80s and 90s song a girl could ask for! I was serenaded by her friends and Fiona herself, in the most embarassing fashion possible, including a lap dance O.o A very good friend of Yves' and mine, Pooky, even managed to come out despite getting in a car accident only a few hours earlier, and he was more than happy to join in the serenading.
And so the night progressed, with lots of alcohol, singing, and hilarious antics. Eventually, Yves (my loving fiance) was called to rescue the remaining partiers, which he gallantly did despite having worked for the past 28hrs. After dragging my drunk ass home, he sat with me and regailed my east coaster bff with hilarious stories about our many friends to prepare her for the wedding :P Eventually, however, we were sent to bed, and Yves tucked my sloshy self in.
So where is this all going? Well, early this morning I woke up - still a little tipsy! - to find Yves still wasn't in bed. When I retrieved him from a batman-themed campout on the couch, he woke up enough to come to bed and we talked for over an hour ... just like we do every night. Even on the night of my bachelorette, I couldn't go without our little routines!
In short, my bachelorette did exactly what it's meant to: let me blow off some wedding-stress steam with amazing people, got me a tad fasnookered, and reminded me exactly why I'm marrying my big, sweaty frenchman! Because at the end of the day, he's my best friend, my favourite person, and the center of my universe.
<3 <3 <3 Can't wait for the wedding, when we get to do this all over again with ALL our friends and loved ones.
Except John + Louise from kayakyak. jerks.
(I'll post some photos on here if I find any that are fit for public consumption. Me in a veil is definitely a sight! :P )
October 15, 2010
I want to send a big shout out to the person who searched "chinchilla chainmail hammock" yesterday and was referred to this site. I have no idea why you were searching such a thing, but now I desperately want one. Your search term was a much needed bright light in a shit-tastic day.
[ps. For the record, a chainmail hammock is totally doable but incredibly dangerous. Between little holes for feet to get caught in and tiny cracks for whiskers to get caught in, the whole idea is a giant danger zone for chinchillas and degus alike, which is probably why your google search sent you here. If you must, get one custom made (email me for a referral) and ensure that a proper fleece cover is attached VERY securely to save the feetsies of your poor chirla. That being said, chinchillas are notorious in their mischievous ability to get at anything they shouldn't, so I still say its a bad idea. A cool one, but a bad one.]
October 11, 2010
This blog has seen high and low times before... more of the latter than the former, to be fair, but never have I left longer than a few weeks, maybe two months tops. I posted on a different blog before this one, send update letters to my mailing list at least twice a year. I think I've had some sort of digital update system for at least 5 or 6 years now.
My website is full of images from 5 or 6 years ago. The new one sits half finished, full of almost realized ideas and necessary changes that have never seen the public forum. This blog and 4 others like it sit, rotting, like a million other abandoned internet projects across the web. I've always been a touch flighty, but 6 months between updates? What happened?
Life happened. I stopped updating when I met my wonderful partner last June. I wrote a little about how amazing he was and how busy I was with him, but not much else. I started a blog about our fuzzy family and rescue work - I still have half a dozen unfinished drafts saved to it. I update my facebook regularly, but even that I ignored for most of July ... And obsessively checked it all of August. Why?
Because I spent all of July in the hospital.
I've made no secret over the years that I suffer from crippling depression - I believe that secrecy only breeds more pain, in everyone. Depression does not just affect the sufferer, but every single person they love. Every person they interact with. It effects our jobs, our pets, our loves, and even our damn diets! So why pretend when we can accept and start working to rebuild?
But I was not in the hospital just for depression. It got me in, certainly, and kept me there longer. But I've been suffering from an unusual, unending chemical depression since my winter in BC and it did not suddenly appear overnight. The man I love, my spouse and fiance, has never known me happy - I met him already deeply entrenched in my chemical nightmare. And all the love in the world couldn't make it go away.
So yes, I needed help. I have what's called Catatonic Depression, which means I shut down when things get really bad. Every december or early january I generally close my door and refuse to move or see anyone for a week or so - when things get really bad, I shut down for more than days. I stop eating. Moving. Caring. Yves, wonderful man that he is, saw this and got me the help I needed to deal with my depression - medications and care that I would never have sought out myself. He brought me to the hospital where they cured my chemical imbalance with pills and renewed my will to improve the emotional imbalance as well.
But that's not the whole story, nor even close. You see, when they admitted me - when Yves sat with the doctors and told them the whole truth - they not only immediately admitted me, they told us we were lucky to have come in when we did, as from my symptoms I'd had less than three weeks to live.
I have autoimmune issues, and have since birth. I was hospitalized for the first time at age 3. I have flare ups which range in intensity but consistently grow longer and more severe each year. These include everything from lung and throat infections to more complex issues ranging from "cold flashes" of Reynode's Syndrome where my body stops providing heat, to intense arthritic pain, to tachycardia and beyond.
As a child, I barely let it slow me down. Constant colds and fevers were part of life, and it was not until jr high that I even realized it was unusual to be sick 20 days out of the month. I quit track when the pain and asthma grew worse. Eventually, I stopped singing and playing music in public as my joint pain increased and my voice changed from constant infections. Still I faced each day with a smile - why dwell on things you can't change? The pain has always been manageable except during an intense attack, which generally only lasted a few hours anyways. I continued to train, to grow strong. Even when new health problems arose in High School, I tried to greet each challenge with strength - I lost 50lbs in 3 months and laughed it off, glad I could finally fit a size 4 even if only temporarily. I gave up fatty foods, wheat, and dairy. I learned to cook my own meals and to modify my workout routine to suit my new limitations, even taking up boxing to help maintain my balance and core strength as they faded. I learned to lip read as I lost my hearing. I grew, adjusted, changed, and learned from each and every new obstacle.
Every time something new threw itself down before me, I did my best to work with it, knowing that someday -maybe not now- I would understand the plan behind them. Wheat intolerance taught me the value of proper eating. Sugar and dairy intolerances taught me the joys of moderation (sometimes). Losing weight taught me the frustration of being weak and inspired me to work harder to maintain a healthy body despite the growing reasons to give up on physical health.
I almost died from a combination of ill health and depression... Yet I had always faced my health concerns head on before my winter in BC. What changed so much that I ended up lying on the floor for days on end when a few short years before I'd been working 4 jobs and struggling to keep my work week down to 90hrs so I could visit my loved ones in the hospital? When did I become the one who needed visiting?
Pain is the main answer. Chronic pain, like fear, is the mind killer. It eats you alive from the inside out until you become a shell. Yet after 3 months nearly pain free, I am off my medications and facing the full return of daily pain, of weekly flare ups and an ache that never quite goes away. Why did I give up that pain management if chronic pain is so difficult to deal with?
Because I am more than my pain, more than my illness, and far more than my depression. On medication I felt ok all the time... never good, never bad. I lost the will to do anything at all, even without the catatonic depression. 4 months of bedrest recovering from my physical limitations and I found I was self-limiting. I wasn't recovered, because I wasn't myself. If I'm not creating or evolving what is the point of recovering?
So here I am, sore and exhausted and ill, battling the same depression demons I have fought since I was 8. But -for the first time- my fiance is getting to know me, the real me. And he still holds me when the pain gets bad, and he still loves me when I'm too ill to rise for days on end - because there is no cure for my disease, but there is a cure for depression: HOPE.
I suffered this summer, worse than I care to admit even to myself. I spent a month nearly catatonic, another month under 24hr watch at the hospital, and nearly EIGHT WEEKS bed ridden when I returned home. I've only been back on my feet for three weeks and I still have to limit myself to a maximum of 12 hours upright each day, maybe 5 working, yet I'm upright - nothing else matters, really. I have a good man (who will literally carry me when I am too weak to continue), a beautiful home and a loving family (furry and human). Our chinchilla/daughter is recovering from her own illness. My Bella degu is self training to stay on my desk while I work, entertaining me for hours.
My hands hurt. Typing this I have to take breaks, both from the arthritic ache and from the effort of holding my arms out so long. I get winded making dinner, can't stand still long enough to do a load of dishes. I have new scars all over my face and body, my facial mole has been replaced by a crater, and I'm so beyond broke after 2 years nearly unemployed that I can't actually remember what paying all my bills feels like. But I'm still here.
Yet again, I've faced my demons and come back from the brink - survived. As we learn details of my autoimmune condition, the chances of living past 50 drop every test. Odds of pain increasing the rest of my life are staggering, and I become almost instantly immune (or allergic) to any medications. But I'm also planning my April Fool's wedding. I sleep beside a man I love, and get cuddles from my loving pets before bed. I'm learning to love work again, learning to embrace all the obsessive habits I tried to give up when I moved in with my beau and rediscovering myself within them.
I will be the person who beats the odds, or I will die at 50 having lived a full life (or three). Pain may be the mind killer, but love and hope are far more important than a mere mind. Besides, I have pills for that now, too ;P
Don't flee. Don't despair. Don't want anything too much, either. Life is balance, good AND bad. Without it, we'd be lost in that grey neutrality that's worse than death.